Pancare Hero Calls for Re-connection after COVID lockdowns
Louise Pearson is, quite simply, a hero. She is a confident yet humble 53-year-old and would never use that term for herself, but the team at Pancare can attest to the impact she is making in her Melbourne community.
Her story is so remarkable that it is almost unbelievable. At the age of one year, Louise was diagnosed with a rare and aggressive retinoblastoma, a cancer that attacked her eyes and left her completely blind. Her cancer was treated according to what was available at the time (the removal of both eyes followed by radiotherapy), and that was that. Her parents taught her to grab life in both hands and to not take “no” for an answer. Her older brother, David, did not cut her slack because she was blind, so she grew up knowing she wanted to be just like “everyone else’s little sister.” And so, she did.
Fast forward half a century and, today, Louise is an accredited Mental Health Social Worker and counsellor working across both public and private sectors of the disability and chronic illness areas. She helps support people adjusting to a disability, chronic or life-limiting illness as well as the bereaved.
Speaking to Louise today, there is not a hint of self-pity or negativity about having lived half a century with a disability. In fact, if you didn’t know her story, you might wonder why she’s wearing sunglasses in her portraits on her counselling practice’s website or LinkedIn page.
Little did Louise know that she would soon have to use the coping strategies and grief and bereavement counselling methods she’s honed for 30 years on herself. Following a short run of what felt like irritable bowel symptoms and definite fatigue, a colleague mentioned to her over lunch one day that her skin was yellow. Within a week, between the first COVID lockdowns in Melbourne last year, Louise was diagnosed with pancreatic cancer. There’s no way to know whether it was related to the cancer that stole her sight as a baby or a toxic effect of the treatments, but she knew she had a fight on her hands.
Despite the triple challenges of a disability, aggressive pancreatic cancer and a global pandemic, Louise considers herself one of the lucky ones. She was eligible for and underwent Whipple surgery, a complex procedure removing much of the pancreas and tumours within. Although the recovery from this surgery is – in a word – brutal, it can significantly increase the odds of surviving five years from a paltry 11% to over 25%, and up to 50%1,2 with additional therapies incorporated.
But don’t spout depressing statistics at Louise. In her own words, “she’s not going anywhere,” even with the cancer returning in April after chemotherapy failed to rein it in. She felt blessed to have the opportunity of some stereotactic radiation treatment in June and is back to hoping for the best. She has too much to do in the way of helping others.
She’s connecting with others affected by upper GI cancer and filling what she sees are major gaps in the supportive care continuum. Her YouTube channel displays the highs and lows of her pancreatic cancer journey in a heart-warming and disarmingly funny way; her blog posts deliver common-sense techniques for dealing with difficult situations, especially the loneliness of a cancer diagnosis.
Louise is slated to speak at Pancare’s Bendigo “Let’s Chat: Upper GI Cancer and You” education day, which will ensure that hundreds more people in need across Victoria can experience a positive person-to-person connection with peers and understand that they are seen and supported in their journeys with upper GI cancer.
Louise said, “Well for me, as a counsellor and as a person, real, live, warm, human connection is the name of every game. My closing line of every counselling blog is ‘stay safe, and as always of course, stay connected.’ We need to reconnect in person.”
She continued, “If we’re connected, we have hope. We have people who might even need us or love us. We have people cheering for us and aware of when we’re down. I feel that cancer can be a very lonely experience. Apart from the more talked about cancer symptoms which might be messing up your life completely, you’re living with that horrid uncertainty, which I believe is up there with the worst of the invisible symptoms.
“If I could have had someone say to me, ‘Hey, what you have read about chemotherapy doesn’t all come true. I know. I’ve been there’, or ‘Lou, you’ve been through Whipple [surgery]. I don’t think much is going to trump Whipple. You’ll get through this’. Those sorts of sentences come from connection. And although we can make do during COVID times, not being held back by COVID is so important. Also, it means we can connect in a better sense with friends and family.
Louise concluded, “Connection is key, in my opinion. We need to reconnect with the sides of ourselves where we have fun and laughter, and we need to see each other to do that. Because fun and laughter are – absolutely — possible and needed with a cancer diagnosis.”
The human connection Louise speaks of is why Pancare is going back on the road and hosting forums across Australia – to ensure all those touched by the devastation of upper GI cancers can unite with hope.
Hearing Louise’s story and how she’s approached life with grace, resilience, and positivity will help thousands of Australians. She is truly a hero.
Helpful resources for patients and carers by Louise Pearson
Hear more from Louise at the below links. She hopes that these posts offer insight and hope for others facing upper gastrointestinal cancers.
“Pancreatic Cancer with No Eyes!” – Louise’s Youtube channel capturing her experiences as a patient with pancreatic cancer who is also living without sight.
- “The Cancer Returns: Pancreatic Cancer with No Eyes!” – Louise’s most recent post
- “Chemo on the Horizon: Pancreatic Cancer with No Eyes!” – Louise’s Youtube channel capturing her experiences as a pancreatic cancer patient who is also living without sight.
“Strategies for Coping: When You’re the One with a Life-limiting Illness” – Louise Pearson Counselling, June 2022
“Dealing with Uncertainty: When You’re the One with a Life-limiting Illness” – Louise Pearson Counselling, August 2022
Louise Pearson Counselling – Louise’s private practice website and blog
“Exploring the grief and bereavement that can accompany chronic illness and disability” – Inside Social Work podcast, Episode 31, Interview with Louise Pearson, July 2020.
- Conroy T, Hammel P, Hebbar M, et al. FOLFIRINOX or Gemcitabine as Adjuvant Therapy for Pancreatic Cancer. N Engl J Med 2018; 379:2395-2406
- Neoptolemos JP, Stocken DD, Friess H, et al. A randomized trial of chemoradiotherapy and chemotherapy after resection of pancreatic cancer. N Engl J Med 2004; 350: 1200-1210)